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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> People just don't understand!!!
        
(Message started by: toolong on Sep 6^th, 2004, 4:10pm)

Title: People just don't understand!!!
Post by toolong on Sep 6^th, 2004, 4:10pm

Is it just me or do the rest of you here at this site having trouble getting people to understand just what the HELL we have to deal with?I don't think any one that has not experienced a CH can fanthom the pain we live thru.I think most just think I'm a girl thingy and can't tolerate a little neadache. Or that I'm just anti social.I wish I could just let them taste a second of the pain I deal with,just one second.Idon't wish my headaches on anyone,but for a little understanding......Just venting Sorry.David [smiley=nopity.gif]

Title: Re: People just don't understand!!!
Post by vig on Sep 6^th, 2004, 4:12pm

Rant away. You're in good company.

Title: Re: People just don't understand!!!
Post by Jonny on Sep 6^th, 2004, 4:16pm

on 09/06/04 at 16:10:19, toolong wrote:

I don't think any one that has not experienced a CH can fanthom the pain we live thru.

BINGO!!!!....I gave up trying to explain many years ago.

...................................jonny

Title: Re: People just don't understand!!!
Post by karma on Sep 6^th, 2004, 4:24pm

The best way I found to describe it is
The pain of brain freeze together with the pain of an abcessed tooth for an hour at a time, over and over again!
But mostly I don't try and it really doesn't matter what other people think anyway.

Title: Re: People just don't understand!!!
Post by clarence on Sep 6^th, 2004, 4:55pm

Dude, I totally understand. Trying to get Oxygen today from the pharmacy, the pharmacist, who had talked to my Dr., asked if I was the guy with meegranes. I was like, "No, not really." She didn't mean anything by it, but she just didn't understand. And you're right, people don't understand it. If everybody understood, I guess we wouldn't be here. The cool thing is (if you can call it cool) is that everyone here understands, and we are just as much with you as you are with us. It doesn't make it any less frustrating when attampting to explain the affliction, but, for me anyway, it has been comforting to find people who can relate and who care.

Vent away bro, I'm with you.

Casey

Title: Re: People just don't understand!!!
Post by IndianaJohn on Sep 6^th, 2004, 5:42pm

I gave up trying to make people understand years ago. They just don't get it. What's even worse is when they try to trivialize it "oh it's just a headache, get over it". I just want to stab them in the eye and wiggle the blade around for a while and ask them "is this just a headache?" . Not even my own family understands what I have to deal with.

So I know your pain and frustration my brother, vent away!

John

Title: Re: People just don't understand!!!
Post by Prense on Sep 6^th, 2004, 7:04pm

on 09/06/04 at 16:10:19, toolong wrote:

Is it just me or do the rest of you here at this site having trouble getting people to understand just what the HELL we have to deal with?

There is absolutely nothing to gain in explaining CH. The exception is when dealing with those close to you...

Chris

Title: Re: People just don't understand!!!
Post by Redd715 on Sep 6^th, 2004, 7:09pm

My brother is about the closest thing to a supporter I have. We don't see each other often but we do talk very deeply when we do get the chance to get together. Saturday night he came up to take me for a long night time cycle ride and to give me the money from my gun selling and he got to witness a K8 freak show right in the middle of the bar as the bastard hit hard and fast. ( Ive said a time or two I think the rides scare the crap outta the beast because I never get hit while riding) Mind you I've graduated from screaming to muffling deep gutteral groans mixed with some mutated form of old Lamaz breathing at that level. Stomping my feet, smacking my fist into the side of my skull and grinding my palm into my eye socket, anything to divert my attention from the pain.

He said a number of times he can't imagine what it has to be like. I think he "sort of" gets it now.

Title: Re: People just don't understand!!!
Post by nani on Sep 6^th, 2004, 10:33pm

Ohhh yeah ... I know what you mean. The last time one of my adult kids made that scrunched up baby face and said "OH poor Mom-you have a little headache again" I told her I'd be happy to put a chef's knife thru her eye and show her how it feels. My husband is great, my little kids are okay, but the big kids suck >:(

Title: Re: People just don't understand!!!
Post by eddie on Sep 6^th, 2004, 11:23pm

dido
dido
dido & dot them in eye
and get out of my face
>:( >:( >:(
but everyone here are very understanding
and for that i thank each and everyone ;)

Title: Re: People just don't understand!!!
Post by synergy on Sep 7^th, 2004, 3:46am

You knida have to get to used it - funnily enough its my best mate who was the best at understanding CH - she has never witnessed an attack, never heard of CH but the difference between her and other people is that she listened to what i had to say about CH before passing judgement on it.

If only more people listened then maybe they would understand.

Title: Re: People just don't understand!!!
Post by Jaime on Sep 7^th, 2004, 7:13am

I'm less frustrated with getting "people" to understand. What really chaps my ass is getting a doctor to understand. I talked to one doctor last week who told me to go to Walmart and start at one end of the allergy and sinus aisle, and try all the over the counter meds until I found one that worked. I already tried that weeks ago, and it was part of the story I told him. I wanted to grab his throat and ask him if he learned to listen in medical school or was it a talent he lost with senility? [smiley=pokeeye.gif]

Title: Re: People just don't understand!!!
Post by toolong on Sep 7^th, 2004, 8:54am

After all these years I've met people who understand.Thanks for the support.My witch doctor just wants to keep pushing frigging narcs,anti convulsants and anti- depressants in me.I'm not fucking depressed,I have CH!Find out what to do about that! [smiley=huh.gif]

Title: Re: People just don't understand!!!
Post by farmboy on Sep 7^th, 2004, 11:17am

Most will never get it or even have a clue to how much pain is involved with these CHs. Alot think you are faking it or overdarmatizing the pain. It is hard for them to imagine this pain , if they never had anything close to this level of pain.
I would say they do not have anything to relate it to

But when they actually see you having one then it dose seem to sink in to some extent.

Title: Re: People just don't understand!!!
Post by FZfan on Sep 7^th, 2004, 1:01pm

I have had some luck referring friends and family to this site to at least read the intrductory stories. Some of them really did develop a better understanding just by doing this. But, ultimately, most folks will never "get it". The best thing to do with these folks is ignore them.

Unfortunately, because this affliction is rare, it is one of those things that cannot be understood without being experienced.

That's why we need the portable cluster attack projector. ;;D

Title: Re: People just don't understand!!!
Post by ArCane on Sep 10^th, 2004, 1:08pm

on 09/07/04 at 13:01:35, FZfan wrote:

That's why we need the portable cluster attack projector. ;;D

Aren't those banned by the Geniva convention?

Title: Re: People just don't understand!!!
Post by ferbio36 on Sep 13^th, 2004, 1:47pm

Yes,people don't understand.But we are what I consider friends here,and we do understand.If you ever need moral support,just e-mail.Hang in ther bro ;;D

Title: Re: People just don't understand!!!
Post by Bob_Johnson on Sep 13^th, 2004, 5:00pm

Sympathy often comes after information; empathy comes from a shared experience. So, if I tell you that I have ankylosing spondylitis, what's your reaction?

Yah, a George Bush "deer stare" is what I usually get to that one!

Make it simple. I tell folks to imagine taking a paperclip, unbending it, and stick the end in the eye ball. Usually their imagination does the rest. If they want to know more, they will ask at that point.

Title: Re: People just don't understand!!!
Post by Tom K on Sep 13^th, 2004, 5:21pm

I thought I was the only one who gave up long ago telling people what it is like. Luckly [smiley=huh.gif] there is another CHead who has been there for years. Never heard of our site, showed him the info and he worked at getting it to everyone. He has been there 20 years, I have only been there 1 year. Never before have I had such support at a job. Most people there are cool with it because of seeing the other guy in the throws of a K8, they just back off and tell me to go do what I need to do, even if that is to go back home.

Title: Re: People just don't understand!!!
Post by StanTheMan on Sep 13^th, 2004, 9:51pm

One small tidbit that I'll add here...

If you're talking to women who've gone through childbirth, I've mentioned that I've heard from female clusterheads that would "pick childbirth" over having a couple of rounds of CH any day.

That will usually get their attention.

But, yes, I agree that more often than not, getting people to understand is futile.

StanTheMan

Title: Re: People just don't understand!!!
Post by clavers on Sep 15^th, 2004, 11:17am

I think that we have to understand that no one could possibly know what we go through unless they have experienced it themselves.

Title: Re: People just don't understand!!!
Post by toolong on Sep 15^th, 2004, 6:46pm

I guess you are right.

Title: Re: People just don't understand!!!
Post by Ruth on Sep 15^th, 2004, 7:25pm

I have found that it is futile to try to explain to anyone. I get a sympathetic ear from time to time.
But I have to tell you what has made me nearly go postal and that is the treatment I get at my Pharmacy. I have to go every 24 hours to pick up one prescription of the imitrex stat, and they always give me a bad time, like well you just picked one up yesterday, and I say yes I did and I am here to get another one today. I can do that every 24 hours. then I got a new refill from my doctor and this B, tells me their is nothing in the computer for me, you picked one up yesterday.
I just about lost it, but with out coming over the couter at her I did get her attention and I did get my meds.
Now do you all thing that is really necessary!

Title: Re: People just don't understand!!!
Post by Tom K on Sep 15^th, 2004, 9:05pm

Pretty funny story last night, since my wife has signed up on the board and has been doing a bunch of reading, that and seeing me in the throws of a K10+, she is pretty well educated. One of her friends calls last night and my wife was telling her about what has been going on in the last few weeks, she had a miscarrage 4 weeks ago on the same day I was getting hernia surgery, then the CH starting 3 weeks ago it has been a rip roaring good time around here. So (get on with it) the friend says, oh I get a migraine once in a while, too. My wife went off on this woman like all get out. Pretty funny, she has been converted! Just thought I would share.